Recently Diagnosed PMR Disease Progression

Jeff I missed this message! yes I have jaw pain , tenderness around my ear, ear pain, I have tinnitus and the ringing has got really loud the last few days. I’ve not contacted my Rheumatologist yet until I get the ultrasound July 1st hard to believe only 1 out of the 4 hospitals near me do this specific ultrasound. I knew nothing about PMR until I started searching temple swelling and found out about GCA I will mention it when I talk to the doctor

Yes I am keeping a journal of the dose and my pain and stiffness levels. I go back to see the doctor at the end of this month. I plan to go over it with him. I was doing so much better at 20 mg OK at 17.5 mg but at 15 mg. I'm in pain all most all day.

Hi @sbtheplumber1, I suggest you contact your Rheumatologist and let her/him know what is going on. Sometimes, when GCA is suspected, doctors prescribe Prednisone before the results of the diagnostic test come in. Your Rheumatologist may be able to get you a temporal artery biopsy before you can get the ultrasound. Remember, if you experience any visual disturbance go to the Emergency Room.

Teri sorry it took so long to get back to you I went to the ER Wednesday evening and was admitted . I still can’t get the Ultra Sound done until July 1st but they done a CT scan and MRI and said I don’t have GCA but want me to still have ultra sound. My temple swelled again and headache and eye/ear pain got worse. I also have a 3 cm Choradial Fissure brain cyst on the left side which I’ve had for 30+ years that they thought could be pushing on the right side but they ruled that out. They were going to release me unless I still had the headache which I do so they kept me . I’ve also got nerves pinched in my neck and laying here my temple swells but setting up headache gets worse. I was typing someone and leaned my head to the side and I felt the temporal pain . So who knows what I have

Go to the ER. Don’t wait to see a doctor and mention it. I lost my sight because I did not go to the ER right away. You have GCA which is terribly serious

I went to the ER Wednesday they ran a bunch of bloodwork, Glaucoma test and done a CT which showed negative for GCA, seeing a Choridal Fissure Cyst on my brain they were concerned ( I’ve had it for 30+years) so more bloodwork and an MRI the next day it’s not the cyst but headaches keep happening , medicine list totally screwed up and I was bragged upon for a printout of all my medical , They tried giving me a blood pressure pill that changed last year I switched to a different one they tried giving them both and the wrong dose of my new pill and when told I take mine in the morning they changed it but still tried giving both the next morning. I’m still scheduled for head/neck soft tissue ultrasound Tuesday . They tried imitrax for migraine(single and double dose , prednisone , doubled Methocarbamol from 650 at bed to 1500mg 3x a day, hydrocodone, tramadol, Tylenol. Nothing helped I have a pinched nerve I believe at C2 and another going both directions C4/5 or C5/6 and C6/7 spinal starting to pinch plus bulging disc. I leaned my head to the side and felt the pain so I’m thinking it’s pulling on my neck . I kept slightly swelling at night on my right temple and a headache when getting up sometimes both sides. I also had the stimulator put in in January then redone April 8 and readjusted a week before headache. I’m wondering as well about the stimulator causing it after reading about leads moving and paddles not helping
My leads moved and I had them replaced with paddles that’s not working right yet.

I went to the ER Wednesday they ran a bunch of bloodwork, Glaucoma test and done a CT which showed negative for GCA, seeing a Choridal Fissure Cyst on my brain they were concerned ( I’ve had it for 30+years) so more bloodwork and an MRI the next day it’s not the cyst but headaches keep happening , medicine list totally screwed up and I was bragged upon for a printout of all my medical , They tried giving me a blood pressure pill that changed last year I switched to a different one they tried giving them both and the wrong dose of my new pill and when told I take mine in the morning they changed it but still tried giving both the next morning. I’m still scheduled for head/neck soft tissue ultrasound Tuesday . They tried imitrax for migraine(single and double dose , prednisone , doubled Methocarbamol from 650 at bed to 1500mg 3x a day, hydrocodone, tramadol, Tylenol. Nothing helped I have a pinched nerve I believe at C2 and another going both directions C4/5 or C5/6 and C6/7 spinal starting to pinch plus bulging disc. I leaned my head to the side and felt the pain so I’m thinking it’s pulling on my neck . I kept slightly swelling at night on my right temple and a headache when getting up sometimes both sides. I also had the stimulator put in in January then redone April 8 and readjusted a week before headache. I’m wondering as well about the stimulator causing it after reading about leads moving and paddles not helping
My leads moved and I had them replaced with paddles that’s not working right yet.

Hello @kmmi . I too was diagnosed very recently (around April 9th). And, my family doctor had me try a blast prednisone of 2 weeks, starting with 20 mg for three days and then 15 mg for three days and so on to 0. It worked at relieving my symptoms the first three days but with each successive drop I felt more and more pain. This is not a common approach and is not found in any literature that I have come across. It was a nice attempt and helped to further diagnose me but we were pretty sure I had/have PMR based on the clinical presentation, ESR and CRP blood numbers, and then the quick response to a 20 mg dose of prednisone. I started a "standard" dosage of 15 mg and am following the taper protocol outlined in an international study from 2015. It is a basic protocol but clearly it is just a guide as everyone has a different experience. I stayed on 15 mg for a month and tapered to 12.5 after that. I have been on 12.5 mg for the last three weeks and then just dropped to 10. My first drop to 12.5 mg came with about a level one pain and stiffness in the shoulders and neck. People on Mayo Clinic Connect said that that was not too uncommon and should diminish in a week or so. It did and I am not 100% after three weeks on the 12.5 but at an almost undetectable pain level. I did try some tylenol and it helped at first taper. However, what you describe sounds more like the enigmatic "flare" that we hear about. I was told by this chat room that if the pain continued and got worse after each day or week then I was tapering too fast and should go back to the original dose. In other words, I would be in a flare if that were occurring. Fortunately I have not had that happen with my first taper to 12.5 mg from 15 mg. I am hoping for the same with the drop from 12.5 mg to 10 that I just started this morning. Yes, prednisone is frightening but also a miracle. My doctor too and virtually every friend says "you gotta get off that stuff ASAP". Of course I and we all know that but there is not much else we can do. Kevzara (one of the biologicals) is possible but as far as I know, only after a fail or two on tapering. It sounds like some Drs are able to get insurance to budge and allow it earlier from what I have gleaned from this chat room. I might try that with my insurance but that can be a mountain to climb. My hope is to get to single digits with the prednisone and then look into it if I have trouble going down. I am more frightened off the prednisone creating a new problems for me than I am the pain of PMR some days but a short taste off that pain and debilitation reminds me to keep on the prednisone for now. Good luck.